Continued from Feb 1
2. Positive aspects of the report
Since the publication of the heavily-criticised 1996 Joint Royal Colleges report on CFS, there has been a black hole in the professional and public recognition of the illness. The CMO report advances current thinking in several key aspects.
2.1 Recognition of CFS/ME as an illness
The report gives an authoritative statement that CFS/ME is a real illness which requires professional help, and has particular problems owing to the controversy which surrounds it. It consolidates the acceptance of the disorder previously expressed by the Departments of Health and
Social Security and by the BMA as long ago as 1988:
"CFS/ME is a genuine illness and imposes a substantial burden on the health of the UK population. Improvement of health and social care for people affected by the condition is an urgent challenge." (1.0)
"Patients, their carers, and healthcare professionals encounter different levels and varying manifestations of disbelief and prejudice against people affected by the condition." (1.0)
"CFS/ME is a genuine illness. It should cease
to be a waste bucket for heart-sink patients"
2.2 Recognition that CFS/ME can be clinically diagnosed
The report makes it clear that CFS/ME can be clinically recognised for management purposes, and lists in Annex 6 the clinical assessment investigations that should be performed. These include:
Full clinical history
Physical examination
Mental health evaluation
Sleep evaluation
Basic screening tests, which can involve
Full blood count
C-reactive protein (CRP) concentration
Blood biochemistry tests including concentrations of creatinine, urea, electrolytes, calcium, phosphate, glucose, liver enzymes, and markers of thyroid function
Simple urine analysis
Other tests determined by history or examination
The diagnosis is based on the characteristic pattern of symptoms, once alternative diagnoses are excluded.
"Although the disorder is clinically recognisable, CFS/ME assumes many different clinical forms and is highly variable in severity and duration, but lacks specific disease markers."(3.0)
2.3 Importance of a positive diagnosis
The report stresses that CFS/ME should cease to be a waste bucket for `heart-sink' patients.
"A diagnosis of CFS/ME relies on the presence of a set of characteristic symptoms together with the exclusion of alternative diagnoses." (4.2.1.1)
"A positive diagnosis of CFS/ME is needed, rather than one of exclusion. Without a validated test for the illness, diagnosis is based on recognition of the typical symptom pattern together with exclusion of alternative conditions. Thus, a positive diagnosis can usually be made from clinical history, examination, and a few appropriate laboratory investigations, as in other chronic illnesses of uncertain nature." (4.2.1)
2.4 Need for action
The clear emphasis on the need for health and social care provision in CFS/ME is perhaps the most important thrust of the report.
"Appropriate management and service provision for patients with CFS/ME and their carers are urgent priorities." (4.0)
In the view of the report, `action' includes further research, especially concerning the severely affected.
"We suggest that the prevalence and impact of severe disease, the pathways to chronicity and to becoming severely affected, and strategies that would benefit such individuals urgently need further study." (4.4.1)
2.5 Estimation of prevalence and service need
Given the wide variation in estimates of prevalence - partly a function of differences in case definition - the report comes up with a sensible estimate:
"On the basis of a reasonable estimate of adult population prevalence of 0.4%, a general practice with a population of 10,000 patients is likely to have 30 to 40 patients with CFS/ME, about half of whom may need input from services. The proportion of the latter patients who are severely affected by the disease is thought to be up to 25%." (4.5.1)
2.6 Suggestions for best practice
At present, there are no guidelines on what clinicians should do with CFS/ME patients. The report has attempted to fill this gap.
"The incremental development of a locally based service, including provision of domiciliary care for severely affected patients, would significantly improve care for all patients with CFS/ME, but especially for this most disadvantaged of patient groups. The general components of such a service are: medical care, support for adjustment and coping, facilities for energy/activity management, and nursing and personal care." (4.5.2)
2.7 Instruction to clinicians on patient management
In contrast with sensational media reports about the benefits of cognitive behavioural therapy and graded exercise, the report is clear about the limitations of current management strategies:
"No management approach to CFS/ME has been found universally beneficial, and none can be considered a cure." (4.1.2)
Chapter 4 of the report details the general principles and some specific advice for management of the condition by GPs and healthcare professionals. Its key messages are important and are worth restating:
Initial professional responses to CFS/ME can have major impact on the patient and carers. Clinicians should listen to, understand, and help those affected to cope with the uncertainty surrounding the illness.
Early recognition with an authoritative, positive diagnosis is key to improving outcomes. Symptoms are diverse, but increased activity invariably worsens fatigue, malaise, and other symptoms with a characteristically delayed impact.
All patients need appropriate clinical evaluation and follow-up, ideally by a multidisciplinary team... The overall aim of management must be to optimise all aspects of care that could contribute to any natural recovery process... Patients can be empowered to act as partners in care.
Although care packages need to be individually tailored, where appropriate they should include visits from primary care teams, and assessment and provision of equipment practical assistance. (4.1.2)
2.8 Description of CFS/ME in children
The section of the report dealing with children and young people with CFS/ME is particularly well-written. There is a clear description of the impact of the illness on the child, the family, and the community. The development of an integrated and multidisciplinary package of services is recommended as a matter of urgency, and the statement of rights is particularly welcome:
"Children's rights are safeguarded by UN convention and need to be respected at all times by professionals and parents/carers. The rights to be heard, to have their views taken into account, to access quality medical treatment, and to be protected from abuse both by individuals and by systems need particular attention." (5.0)
2.9 Recommendations to healthcare professionals about benefit provision
The report encourages healthcare professionals to be sensitive about their role as facilitators of welfare provisions:
"Negotiations with insurance companies and the Department of Social Security about proportional and rehabilitation benefits and therapeutic work can improve outcomes, and health professionals have an important role to play by providing support and advice in these negotiations. The same level of understanding needs to be shown by medical advisors to insurance companies and the Benefits Agency about the condition, its natural course, prognosis, and range of available approaches to recovery." (4.4.5)
"It is not appropriate that participation in a particular treatment regimen is made an absolute condition for continuation of sickness/disability payments." (4.4.2)
"No management approach has been found universally beneficial."
2.10 Appropriate attitude for healthcare professionals
There are also some clear warnings for healthcare professionals:
"Healthcare professionals should adopt an understanding attitude and should not get into disputes with patients about what to call the illness, or about the belief that it doesn't exist." (4.1.1)
"Treatment should always be a collaboration between the patient and the clinician, and not something imposed. Good communication and a good therapeutic relationship can make an appreciable difference." (4.4)
"...our conclusion is that clinicians need to apply current knowledge despite the remaining uncertainty [about disease cause or process]; inaction due to ignorance or denial of the condition is not excusable." (4.1)
"CFS/ME should be treated in the same way as any other chronic illness of unknown aetiology. The aim is to develop a supportive relationship, and provide information and education to assist the patient, families, and carers towards self management with support." (4.1.2)
"All interventions need to be administered with thought and care, and in accordance with revised Department of Health recommendations on informed consent." (4.4.2)
2.11 Importance of patient consent for management strategies
The need for the active consent of patients to therapeutic interventions is stressed at various points in the report.
"The decision to recommend a particular approach is best guided by the individual's illness and circumstances."
"The content and development of any such approach should be mutually agreed by both clinician and patient and informed by up-to-date specialist knowledge."
"It is not appropriate that participation in a particular treatment regimen is made an absolute condition for continuation of sickness/disability payments." (4.4.2)
"Management strategies supervised by a therapist, including activity management, cognitive behavioural therapy, and so on, can be beneficial, provided that they are agreed and viewed as a partnership." (4.1.2)
2.12 Needs of the severest suffers
One welcome note in the report is the recognition of the particular needs of severest sufferers. While the Working Group chose not to highlight valid data collected by the 25% ME group, which represents the severest sufferers, in the final report, it nevertheless seems to have recognised the plight of these patients.
"A minority of those with CFS/ME remain permanently severely disabled and dependent on others... Current provision of services falls well below what is needed for the vast majority of severely and very severely affected patients... Yet, even if we lack easy solutions, professionals can still support, care, and provide for many patients' needs by reaching such patients in their homes, maintaining contact, and continually exploring potential options." (3.4.3.1)
"In general, this group is excluded from research, so they may not fulfil criteria used to test evidence-based approaches. For example, many comment on the inappropriateness of extreme exercise regimens that have been studied in less adversely affected patients... Care is an urgent challenge that must be addressed in appropriate and imaginative ways, drawing from service models applied to other severe chronic disabilities." (4.4.1)
"The Working Group is concerned that it is necessary to make these points [about severity and its consequences] for CFS/ME, when such considerations are self-evident and part of usual clinical practice for other disorders that are better recognised." (3.4.3)
"In many chronic illnesses, daily functioning, including mobility, cooking, cleaning, dressing, personal care, and social support, can be improved dramatically by sympathetic provision of appropriate practical assistance." (4.3.3)
"Inaction due to ignorance or denial is not excusable."
2.13 Voicing of patient and carer concerns
Use of patient voice throughout the report strengthens the narrative. They give voice to the patient concerns, and - importantly - justification to the antipathy towards health professionals felt by many people with CFS/ME. The chief points arising from the patient voices are poor recognition of CFS/ME by professionals, difficulties that arise over diagnosis, and lack of professional and public acceptance and acknowledgement.
"Participants felt that the widespread lack of understanding of the condition is not specific to clinicians but includes other healthcare and social care professionals. This lack of knowledge was identified by the majority of those consulted, together with a lack of communication and advice, especially in the early stages, on how to cope in general with long-term illness for families and sufferers." (2.2.2)
"There is evidence that some patients `fight' for referrals, and in general GPs are confused over where to refer patients... The overall experience of specialist and hospital services among participants was predominantly negative... Some patients find themselves in geographical `black holes' that lack specialist provision." (2.2.4)
"Severely ill are severely overlooked; just ignored and invisible... Some report that they want to believe doctors and feel `frightened to say no' or that they do not have the energy to disagree. Fears were also expressed over: being `branded' as a `difficult patient', losing benefits, letting people down, not trying, losing the love of the family, and being labelled as mentally ill." (2.3.1.1)
"Some carers were clearly distressed about being ignored by GPs, and some reported unpleasant behaviour." (2.3.4)
"A proportion of patients feel alienated from clinical professionals by early responses to their symptoms, illness experience, and disability." (3.5.2)
"People with CFS/ME frequently experience problems with accessing state benefits." (3.5.1)
2.14 Summary
The positive aspects of the report listed above represent an advance in terms of recognition of the illness and its consequences. Sufferers and their carers can now state, not only that CFS/ME is a genuine illness which can be clinically diagnosed, but that the elements of best practice and management have been sketched out and that inaction by healthcare professionals due to ignorance or denial of the condition is not excusable.
However, the report does not describe how or when change is to occur. It does not describe the cost implications, it does not call for directives to be issued to the various health agencies or professional bodies, and it does not propose any mechanism for checking that changes will be made. Crucially, it gives no indication that the illness will be looked at again in the medium to long term, to assess whether real, meaningful change has come about.
MERGE is the Myalgic Encephalomyelitis Research Group for Education and SupportCont. tomorrow Feb 3
Posted by peter200015
at 11:26 PM EAST
